Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

Sunday, August 19, 2012

111 Days Later, 1 BIG Bucket List Accomplishment!

Please continue to share Avery's story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!

Being far from superstitious people or the type who get caught up in "numbers or signs", we have to admit, the update we are about to provide truly boggles our minds while bringing smiles to our faces and tears to our eyes.

Yesterday evening (August 18th), exactly 111 days after Avery passed away, we received a phone call from Vincent Gaynor with Sophia's Cure Foundation notifying us that the total amount of donations in Avery's name had just reached over $500,000. With the multiple matching donors, this means exactly 111 days after Avery passed away, she achieved her goal of raising the $1,000,000 ($1.5+ mil to be exact) necessary to fully fund the Phase 1 clinical trials of Dr. Kaspar's Gene Therapy program in an effort to cure Avery's friends with SMA. And as soon as the FDA gives approval, estimated to be in the early part of 2013, Dr. Kaspar can begin helping Avery's friends.

Thank you to everyone who donated $0.01 to $111,111.11 and beyond. Avery's goal could not have been achieved without you and we sincerely thank you from the bottom, middle, top, and all sides of our hearts! Please remember to continue sharing Avery's story, spreading her message about SMA to protect future children & their parents from SMA, and helping to fund a cure for Avery's friends still battling SMA.

And lastly, please remember that Avery's goal was to raise $1,000,000 towards a cure for SMA and then do it again...she's already met the first part of that goal and now she's half way towards doing it again. Once again, thank you for being a part of Avery's life and for continuing to be a part of her everlasting story.

Avery laughing upon being released from the hospital after her G-Tube surgery.

Items Avery Can Scratch Off Her Bucket List:

1. Raise $1,000,000 towards a cure for SMA and then do it again and again and again2. Help fully fund Phase 1 of Dr. Kaspar's Clinical Trial

Don't forget to share Avery's story by following & forwarding her blog, following her on Twitter (AveryBucketList) and Like her on Facebook (Averys Bucket List)! The more people who are aware of SMA, the less likely future children will be affected by SMA, and the more likely there will be a cure for Avery's friends who already have SMA!

30 comments:

Congratulation Avery! You did it!!! I hope we get to meet someday. My son Alex and I love to see your pictures! I know your parents miss you a ton so please keep watch over them. They are doing fabulous things in your name sweet Angel.

Well this update just melted my heart. How bittersweet! And twice in the same week, Avery's numbers came up... not a coincidence... I hope you feel Avery all around you. Congratulations, this is wonderful news for Avery's friends and their families.

Thank you for posting that beautiful video of Avery laughing. My heart literally breaks for you, and yet is simultaneously bursting at the news of your accomplishment. Your love and dedication is truly inspiring.

Going forward, should monetary donations now be made in Avery's name through Fight SMA? Or continue through Sophia's Cure Foundation?

I wanted to let you know that I’ve nominated you for two blog awards!http://livingwell20102.blogspot.com/2012/08/one-lovely-blog-award.htmlhttp://livingwell20102.blogspot.com/2012/08/very-inspiring-blogger-award.html

This is so wonderful!! I continue to be in awe of Avery and her Mommy and Daddy and all that you have accomplished. You are an inspiration to so many people and have already saved so many lives. Simply AMAZING!!

Way to go Mike and Laura that is AMAZING!!!!,Avery you are the best!!, I share too in your tears ans smiles!!, I couldn't be prouder or happier for you guys!!!..Also I feel so luck to have come across that fateful day while channel surfacing and stopping on a story about a little girl that was sick..That was Avery!!!, that day changed my life,it really moved me and Avery you had an impact on my life..Thank you Mike and Laura for sharing your daughter's story with the rest of us..I myself will continue to do whatever I can with SMA awarness, it's a cause I firmly and proudly believe in and I get behind in..Chris Poulin Kelowna BC,Canada

To Avery's family and loved ones. I am writing to you because I came across your site when looking up information about SMA. My niece willow has recently been diagnosed with type 1 SMA she is about 5 months old. The stories sound exactly a like and I want to do anything possible to help make SMA better known and to help get fundraisers started and researches finding treatments. Willow has been in the ICU at our local children's hospital for about 3 weeks now. She is a strong fighter and has lots of loved ones surrounding her and her family (willow also has a twin sister). I would love to get into contact with you (Mr. and Mrs. Canahuati) to figure out ways we can tell people about this sad disease. I live in Michigan and am trying to think of fundraiser ideas. You guys seem like an incredible family and I am sure you would be a great help to me and my family. Thanks for your time. May God bless Sincerely, Kara Geenen Contact Information: email kag22@students.calvin.edu

HiMy name is Jenna and I came across your site. I wish I was able to follow Avery's journey. She was such a fighter, and an inspiration. She is and will always be a hero forever. On my site, there is a blog strickly with my poems I wrote on it, and there is one My Brave Hero it's called, written for precious lil ones either fighting an illness, or who have fought, won their fight and are now with Jesus. Avery is My brave Hero.I too was born with a rare genetic syndrome, developemental delays, and 14 other medical conditions.http://www.miraclechamp.webs.comhttp://www.miraclechamp.webs.com

Avery, you are awesome. When I think of you, I think of SMA, when I think of SMA I think of your parents, when I think of your parents it make me realize I'll be a parent and when I think of that I know I'll get tested. The only thing left to think about is hoping I can be half the parent yours are. Mike and Laura, I'm in awe of you as parents and people. I hope one day you fulfill Avery's wish of being a big sister.

I read a book once, and it was all about how there is no such thing as coincidence. I am superstitious, and anytime my clock says 111, or the mileage in my car, I say "Thank you ladies",because I believe that is my angels reminding me they are around. I wholeheartedly believe that 111 days was truly a sign from Avery.